Hi, are there any pmr and migraine sufferers out there that can help?

[missretired]

I've been diagnosed with PMR just over a month ago, and on 15mg of pred. I've just had a really bad bout of migraines which were not typical for me so much so that it made me think I had gca. Are there any other migraine sufferers who could share their experiences with me

[Celtic PMRGCAuk volunteer]

I'm sorry I can't help with experience of migraines but I do hope you checked your migraines out with the GP and that GCA was definitely ruled out.

[LazyDazy]

I suffered from migraine most of my life until about 4 years ago, in my 60s.

I was diagnosed with GCA about 6 weeks ago. I don't have PMR.

Everyone is different but I can tell you my experience in case it may help you. When I got the bad headache that turned out to be GCA, it was very similar to a bad migraine, and had I still been getting migraines I might have thought it was that and delayed going to the doctor.

In my case I was fairly sure it wasn't migraine because 1. I hadn't had one for about four years , 2. It was on th left side if my head and nearly all my migraines used to be on the right, 3. The area of pain extended higher up my head, right over the crown, and much lower down, right into my jaw and neck. My teeth and jaw on that side ached too. 4. The blood vessels in the painful side were swollen as they would have been with a migraine, but also much more tender/painful to the touch. As I had been having trouble with a front tooth, I thought maybe a bad abscess had developed and was expecting the doctor to give me antibiotics and tell me to make an appointment with a dentist. I had never heard of GCA.

How glad I am that I did see the doctor that same day, get the correct diagnosis and get started on the steroids.

So, really, my advice would be the same as Celtic's. If you haven't yet checked out your symptoms with a doctor, I think you should do so right away, just in case you have GCA as well as PMR, which unfortunately often happens. If you do have it, it should be easily sorted, probably with increased pred for a while, and the head pain should clear. As I am sure you know, GCA can badly affect eyesight if left untreated, so don't delay.

I hope this has been of some help and that everything turns ou well for you.

[missretired in reply to LazyDazy]

LazyDazy thank you so much for taking the time to reply to my request. The symptons of your GCA sound horrible and I hope you are on the road to recovery. I have spoken to my dr about the headache and he felt it is a migraine. The problem was that the migraine it didn't present with my normal symptons, especially the pressure pain behind my right eye and ias the headache now been ongoing for six days althought it has moved from my right temple to left temple and now back to right its a little scary.

[LazyDazy in reply to missretired]

Missretired, I am sorry you are having to suffer this nasty headache for so long. Of course, your doctor is probably right. After all, they have the medical training, not us. But if I were you, I would keep 'pestering' him if the headache continues, just in case, and, if necessary seek a second opinion. I personally find the thought of permanent blindness in one or both eyes due to treatment of GCA being started too late, very very scary indeed.

Sorry to sound pessimistic, but better to be safe than sorry. I do hope that by now, your head is better and the worry has been unnecessary.

Good luck and let us know how you get on.

[missretired in reply to LazyDazy]

Thanks for taking the time to reply. Started yesterday to get a problem eating as my teeth grind on each other when I had to chew, my jaw clicks and my tongue is swollen so it's back to the drs.

[GreyOwl in reply to missretired]

Missretired, your description of the headaches sounds a little similar to the ones I get, GCA diagnosed a few months ago. If you've had any of the following symptoms I would go back to your GP and insist on further investigations: pain behind or above eyes or in temples, swollen temples, tender scalp and/or temples, blurry vision, double vision, temporary loss of vision, pain in jaw and/or neck (sometimes pain comes on whilst eating/chewing).

I hope your headaches go away very quickly but if they do persist, particularly with any of those other symptoms then it is very important that you seek further medical attention. Wishing you all the best!

[missretired in reply to GreyOwl]

Hey Grey Owl your comments have really helped me. Thanks a lot.

[GreyOwl in reply to missretired]

missretired, I hope you are soon able to say those headaches are a thing of the past!

[ecshari]

Same here. I was diagnosed with PMR a month ago and was on 15 mg of prednisone when I started having unbearable headache and that would not go no matter how strong a medicine I took. I had to be hospitalised and sedated to get rid of the pain. It took a combination of several painkillers (trmadol, ultracet, celelbrex) plus antidepressants over a period of 4 weeks. I am still taking meds and when I forget, the headache is back! For the last week, Physiotherapy of back and head is helping.